Original article
Parents’ Perspectives Regarding a Physician-Parent Conference after Their Child’s Death in the Pediatric Intensive Care Unit

https://doi.org/10.1016/j.jpeds.2007.01.050Get rights and content

Objective

To investigate parents’ perspectives on the desirability, content, and conditions of a physician-parent conference after their child’s death in the pediatric intensive care unit (PICU).

Study design

Audio-recorded telephone interviews were conducted with 56 parents of 48 children. All children died in the PICU of one of six children’s hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) 3 to 12 months before the study.

Results

Only seven (13%) parents had a scheduled meeting with any physician to discuss their child’s death; 33 (59%) wanted to meet with their child’s intensive care physician. Of these, 27 (82%) were willing to return to the hospital to meet. Topics that parents wanted to discuss included the chronology of events leading to PICU admission and death, cause of death, treatment, autopsy, genetic risk, medical documents, withdrawal of life support, ways to help others, bereavement support, and what to tell family. Parents sought reassurance and the opportunity to voice complaints and express gratitude.

Conclusions

Many bereaved parents want to meet with the intensive care physician after their child’s death. Parents seek to gain information and emotional support, and to give feedback about their PICU experience.

Section snippets

Setting

The Collaborative Pediatric Critical Care Research Network (CPCCRN) established by the National Institute of Child Health and Human Development consists of six clinical centers and a data coordinating center.17 Pediatric intensive care physicians have primary responsibility for the care of all medical patients and routinely provide consultation on surgical patients in the PICU at each center.

Participants

Parents or legal guardians were eligible to participate if their child died in the PICU at one of the

Results

Parents of 161 deceased children were sent letters explaining the study; 56 parents of 48 children (30% of families) were interviewed, parents of 33 children (20%) refused, and parents of 79 children (49%) could not be contacted by telephone. One mother (1%) agreed to participate and was interviewed, but the recording device malfunctioned and the interview was lost (Table I, Table II). Parents were interviewed a median of 8 months (range, 4-15 months) after their child’s death. Five interviews

Discussion

Our findings indicate that many parents want to meet with their child’s intensive care physician to discuss the death of their child, and they are willing to return to the hospital to do so. However, our findings also indicate that such meetings rarely occur. Some parents wanted to meet with the physician early after the death, whereas others preferred to wait until the distress of acute grief had begun to subside. Parents envisioned the conference to be a small personal meeting with the

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    The study was funded by cooperative agreements from the National Institute of Child Health and Human Development and the Department of Health and Human Services (U10HD050096, U10HD049981, U10HD500009, U10HD049945, U10HD049983, U10HD050012 and U01HD049934).

    The list of members of the NICHHD Collaborative Pediatric Critical Care Research Network is available at www.jpeds.com.

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